Tag Archives: Conditions and Diseases

Go Big or Go Home

June was definitely busy, but it didn’t really prepare me for the double whammy that hit as it was heading out the door and ushered July in in unbelievable style. Many of those who know me personally will have already seen this news and have stated the same thought in a multitude of ways, but I think my sister-in-law said it best what she commented “…M can’t go small, can he?..“!

It all started a few weeks ago when M came back into the house with 4 or 5 insect bites on either side of his waist. This is not an uncommon occurrence in our household as we are fortunate to live at the far end of a small village, right on the edge of farmland and during the summer months, M spends a lot of his free time running around our paddock, jumping on the trampoline and climbing trees. It sounds idyllic, doesn’t it? And, to be fair, it mostly is and the less perfect elements of insect bites and his reaction to cut grass are really small and insignificant in comparison. The bites were itchy and red, but nothing looked especially untoward or unusual, although 1 in particular on his right side appeared to have grown into a reasonably large welt thanks to his incessant scratching of it. I shrugged my shoulders, rubbed some cream on to it to relieve the irritation and promptly forgot all about it.

Fast forward 2 weeks or so and M was now complaining of a small lump on his ribs – the right-hand side once again – which was causing him pain and disturbing his sleep every time he rolled over onto it. After putting up with his incessant moaning, I finally capitulated and booked an appointment for him to see our GP to have it checked. I had spotted that that 1 bite was still in situ and now sporting a rather angry-looking red rash around it, so determined it worth getting that checked out whilst we were there too. Add in the fact that one of M’s classmates had been diagnosed with shingles the week before and I had yet one more thing swirling around the back of my head as something else to be mentioned as well.

As soon as M pulled up his shirt in the GP’s surgery, there was no doubt in my mind that we were going to be in for the long haul. As well as the suspect bite and small lump visible on his ribs, there was now a further red rash over his right ribs, which the GP didn’t hesitate to confirm as shingles with really nothing more than a cursory glance in its direction. He didn’t want to start M on anti-viral drugs straight away, but warned that if the rash spread, I’d need to get him back in as quickly as possible for a prescription – and 2 days later that’s exactly what I did. The small lump proved to be nothing more than an overactive and swollen lymph node likely to be the result of his body desperately fighting off the shingles infection and it was quickly dismissed.

However, it was the bite that really raised our Dr’s eyebrows and after a few probing questions from both him and me, I had a sneaking suspicion that I knew where we were headed with this rash. One week on, a 5-day course of anti-virals to treat his spreading shingles rashes and the third doctor’s appointment of the week, there was no question what was going on with M. The red rash circling his bite had become the most perfect bulls’eye rash and Lyme Disease was diagnosed instantly. Fortunately, we appear to have caught this condition early and we all have our fingers (and toes) tightly crossed hoping that the 3 weeks of strong antibiotics will stop the disease in its tracks and reduce the risk of ongoing problems from it.

We’ve been lucky. M is feeling more tired and achy than normal and has been heard grumbling that this double diagnosis hasn’t secured him any time of school. However, his indomitable spirit in the face of unquestionable challenges has shone through and he has determined that he was going to carry on as much as possible despite feeling truly under the weather. The shingles rashes are mostly gone and the impressive target rash of Lyme Disease is also fading as the antibiotics do their thing. There is no question that it all could have been an awful lot worse, but I do wish that M would start to listen when I say that there really is no need to take a “Go big or go home” attitude to life!

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Bringing History Lessons to Life in Berlin

I’m not sure if I’ve mentioned it before, but I’m a big fan of holidays. Not just the trips themselves, but I absolutely love the process from the moment we start thinking about the perfect destination to pick and, much to Mike’s frustration, can frequently be found thinking about where we should travel next, even before we’ve left home on the next one booked. We haven’t done too much travelling since our trip back to Canada last summer, but no sooner had G and I got home from our fantastic day out at the Strictly tour, than it was time to finish the packing and zip up the suitcase for our 5 day half-term break.

Our holiday was perhaps not what people expected, in that we weren’t chasing the sun with a few days at the beach, even though both G and M are desperate to go back to Greece and mention it every time they can possibly shoehorn it into any conversation. Instead, we had taken inspiration from G’s GCSE history syllabus and her learning about Superpower relations, the Cold War and Nazi Germany during the inter-War years, subjects which also happen to tie in quite nicely with M’s focus on World War 1 in his history lessons this year; and so headed to Berlin. As the children have got older, we try to involve them more and more with planning our activities whilst we’re aware from home and this trip was no different. G spoke to her history teacher just after Christmas as the school had taken a group of their A-level students to Berlin a few weeks earlier and came home with some recommendations of the best places to visit to help solidify her learning and understanding of these eras.

Armed with that information as well as the additional research Mike had carried out in the preceding weeks, we had plenty to do to fill our time and couldn’t wait to get started. I had found what looked like a great place to stay: the Citadines Kurfürstendamm Berlin apart-hotel, meaning that we had access to a full kitchen which always makes life a little easier when travelling with food allergies. We were ideally located not too far from the main retail street and within easy walking distance to not only shops and restaurants, but also the Berlin U-Bahn, or Underground rapid transit system.

Our first day started, as it so often does when we travel to a new city, with a “Hop-on, hop-off” bus tour, although we weren’t as impressed with the City Circle Tour offering as we have been with other tour companies we’ve chosen in the past. However, it gave us a great introduction to the city of Berlin itself and helped us work out how to get to the various sights on our list as well as ticking a few of them off without too much hassle. Both G and M were fascinated by their first view of the few remaining remnants of the Berlin Wall, the Brandenburg Gate and the bombed remains of the Kaiser Wilhelm Memorial Church, all of which really brought their history lessons to life.

Pizza and Ballet

One of the Christmas presents we were treated to this year was family tickets to go and see Matthew Bourne’s “Swan Lake” at the Bristol Hippodrome. We have only been to a couple of ballets with the children over the years despite our love of the theatre and my Mum was keen for us to experience this unconventional retelling of this classic ballet. Of course, no family evening out can start without dinner out too and this time round, partly as we were later arriving in Bristol than we’d originally planned and partly because, well, why not, we decided to veer away from our known safe restaurants and look for somewhere new to try.

It’s always a challenge when eating out with G and M because of their dietary needs, but our decision over the last 18 months or so to relax M’s restrictions on high days and holidays in order to find a better quality of life and balance for him means that on occasions like this, we’re able to eat in places where we’re confident he can choose safe ingredients to make a tasty meal. We know that there are a number of restaurants near to Bristol Hippodrome from Pizza Express to Wagamama, so I made the suggestion that we wandered up Park Street to see what else might be available, with our end target being Pizza Express if nothing else seemed to suit.

About halfway up the hill, we stumbled across the marvellous Molto Buono restaurant and, spotting gluten-free pizza bases on the menu, decided to stop there and see how their food measured up to the children’s somewhat exacting standards. It didn’t take too long for G and M to decide what they wanted to eat and were delighted to discover that as well as gluten-free pizza bases, the restaurant also had vegan mozzarella available as a topping. Much to my surprise, G opted for the GF Marinara pizza – tomato sauce, olive oil and oregano – and M chose the GF Diavola – tomato, salami and vegan mozzarella. Mike joined them in trying one of handmade pizzas, whilst I settled on a pesto pasta. The dishes that arrived looked amazing and tasted even better with portion sizes that satisfied even the voracious appetite of the youngest member of our family. I wouldn’t hesitate recommending this restaurant – excellent food, prepared simply, served quickly and all at a great price.

Fully satisfied by our meal and with more than enough time to meander our way back towards the theatre, our evening had started in fine fashion. We all then sat enthralled for the next couple of hours as the story of Swan Lake unfolded before us. Matthew Bourne’s interpretation brings a more modern-day twist to the tale and replaces the well-known Dance of the Cygnets with an incredible male troupe of swans instead. The dancing was incredible and brought real inspiration to both G and M as they watched it in absolute awe, something that should never be under-estimated as M had expressed his concerns about watching a ballet – “…there are no words to explain what’s going on, so how do you know the story-line..?” before it even began.

I think we would all heartily recommend seeing this production, though it turns out that I’m something of a traditionalist when it comes to the setting, much preferring the classic portrayal of the Swan Lake tragic love story. It was fascinating to talk to G and M about their thoughts on the production, with M uncertain as to whether the second half was a dream or not and both expressing the view that the role of the Swan/Stranger represented the 2 sides oft he Prince’s psyche. This was a performance that really challenged everything we knew and expected of a ballet and was a truly amazing experience. Despite my hesitations about some parts of this version, I am fascinated to see how Matthew Bourne has adapted and updated other ballets and hope to be able to see another of his productions soon.

Birthday blessings

This weekend has been one of “those” weekends. You know, one of the ones where there’s so much to do and just not quite enough time to manage to do it all. A combination of birthday celebrations, performing arts classes, auditions and hospital appointments has left us feeling somewhat exhausted; but tonight, after a fun few hours with M, G and a group of their friends, I’m also counting our blessings.

It’s been no secret that M found last year, his first at secondary school, tough. The move into a school environment where his year group was considerably bigger than his entire junior school combined with family deaths and the inevitable challenge of his continued restricted diet left not only M, but all of us, struggling to find a positive way forward. Circumstances last year meant that we didn’t really do much to celebrate his 12th birthday, so I was determined to kick off his teen years in whatever fashion he wanted.

The celebrations started with an M-friendly pear and ginger cake with caramel buttercream icing on Friday evening to accompany his presents, which included the bass guitar and amp that he’s been yearning after for a few months. He had been slightly frustrated with Mike’s refusal to take him to look at guitars last weekend and was only marginally mollified by the promise to get up early this Saturday morning to visit our local guitar shop and examine exactly what was on offer. As you can imagine, his excitement in finding the guitar and its own mini amp waiting for him when he got home from Stagecoach was wonderful to see and we’ve been serenaded with renditions of both “Bohemian Rhapsody” and “Seven Nation Army” since late Friday night! I’m just glad the bass guitar lessons he’s been having at school appear to be paying off already and delighted to see him so wiling to practise in every spare moment.

However, the culmination of M’s birthday weekend came yesterday afternoon as we spent the late afternoon and early evening with a group of his and G’s friends. M had chosen a group of old friends and new, some from school, others that he’s grown up with and the best bit was seeing just how well these different strands of his life hit it off and enjoyed the few hours together. After lots of chat, M had decided he wanted to try his hand at an escape room and we booked 2 rooms at one of our local escape rooms sites. We amicably split into 2 teams, each with an adult and a mix of the older and younger children and determined to compete against the clock, rather than each other to escape our locked rooms.

I was impressed with how well they all worked together and certainly those on my team managed the frustration of solving some of the clues well, with only one of M’s friends needing some redirection and reminders to focus from time to time. We were lucky to escape with just 2 minutes to spare and although Mike and M’s team were not quite so successful – they had found all 4 keys, but failed to open the door in time – everyone enjoyed themselves and were ready to move on for a dinner to suit all dietary needs that were present.

The chatter, camaraderie and chuckles around the table were wonderful to experience and all the children were a delight to spend time with as they enjoyed their food and just spending time together. It was a wonderful way to celebrate M’s 13th birthday and I really have counted my blessings tonight that M has finally found his way out from the darkness of last year with the help of some amazing friends, who accept him for who he is and don’t see his health challenges as a barrier to their friendship with him. A perfect celebration with both new friends and old; and a combination of friendships that I hope will keep going for many years to come.

Be my Valentine…and #SpareARose

How did your day start today? With a card, chocolates or maybe a bunch of flowers? A promise for dinner tonight? Or maybe tonight will just be a quiet night in front of the TV.

You can’t have missed that it’s Valentine’s Day today and you may, or may not, be celebrating it.

Whatever your plans, could you please do just one more thing?

By gifting the price of one single rose (£4) to Life for a Child, you will be helping the Diabetes community to “take care of one another around the world” and giving one month’s supply of life-saving insulin to child living with T1D in an under-resourced country.

It really is that easy and what a wonderful gift to share with your loved one this year.

Happy Valentine’s Day!

Young Carers Awareness Day 2019

Today is Young Carers Awareness Day 2019 and the purpose of the day is to raise public awareness of the challenges faced by young people because of their caring role, and to campaign for greater support for young carers and their needs. Young Carers often struggle with mental health problems of their own due to the strains they can find themselves under, hence the launch of their #CareForMeToo campaign.

I was recently invited to write a blog for Over The Wall about the impact of their camps on our family and I chose to particularly focus on the importance of the siblings camps for children like G, who is recognised as a Young Carer locally. I thought I’d take the opportunity to share my thoughts here too.

 “…when one person in the family has a chronic illness, the whole family has it…”

Jamie-Lynn Sigler

When you live with chronic illness you know that it is about so much more than just the disease itself. Pain, exhaustion, medicines, appointments and hospital admissions are often accompanied by a loss of self-confidence, doubts about self-worth and mental health issues that need time, patience and understanding to come to terms with and overcome. As parents to a child with a rare illness that is little known and little understood, Mike and I have had to find a resilience and strength within ourselves to not only support M as he finds his way to understanding his condition and living his life to the fullest, but also to fight those battles that he is not yet ready to tackle himself.

For the last 8 years, since our appointment with M’s first gastro consultant, our focus has been on finding answers and researching ways to give him the best quality of life we can despite the challenges he faces. As he now heads into his teens, we are seeing the fruits of those endeavours as M begins to make his own choices about the foods he eats, knowing full well the reactions he may experience, and taking on more responsibility for his medicines.

You could say that we’re achieving what we set out to do when we got his diagnosis: to raise a young man who won’t let his illness define or constrain him and who believes that he can be successful no matter what; but we have not been alone in supporting M. Family, friends and our local community have walked every step of this journey with us, helping us in more ways than we could ever imagine was possible; but there is one person who has been there since the very beginning, without any choice and yet who loves M unconditionally and is an indisputable rock for him, even when they don’t always see eye to eye.

She is, without a shadow of a doubt, the unsung hero in our family story.

Since the day her baby brother arrived prematurely in her world, G was determined to help out whenever she could. She put up with his incessant screams from what we now realise was undiagnosed pain and looked to comfort him however she could – making him laugh, giving cuddles, reading stories or just bringing him “Cat” when nothing else would do. Like so many siblings to children diagnosed with chronic illness, G has inevitably been side-lined when that illness has dominated family life and despite our determination to make sure she doesn’t miss out because of it, I know there are times when we haven’t got that balance right and given G the attention she deserves and needs.

From the interruption of frequent hospital appointments to badly timed admissions over her birthday 2 years in a row, G has had to take the back seat to M’s illness more times than seems fair and these are not the only ways in which her life has been affected by his diagnosis. We cannot ignore the reality that having a chronically ill sibling has had a massive impact on G and her mental health too. Anxiety, panic attacks, facing fears and anger management issues are all inextricably tied up with the role of being a young person caring for another and it has been crucial we find a supportive environment for her that has taught strategies for dealing with her yo-yoing emotions and provided a safe and understanding outlet for them. Encouraging G’s involvement with our local Young Carers group as well as applying for a place at the Over The Wall Siblings camps have been important steps in recognising the impact that M’s health has had on her over the last 15 years and have helped her feel that we really do understand and appreciate all that she has had to put up with and sometimes give up too.

That time away at OTW was a week for her to be herself, not defined or viewed in her role as M’s big sister and encouraged and allowed her to take time to focus on herself without worrying about him. G came home a different child to the one who had left us, having realised that her life experiences didn’t isolate her in those circumstances and she had found a sense of self-worth that she had been struggling to develop at home and at school. G’s second camp experience saw her develop a confidence and willingness to take on new challenges, knowing that, with a little bit of self-belief and perseverance, no mountain is too big for her to conquer. OTW brought G out from the shadow of M’s ill health, helped her rediscover who she is as an independent individual and gave her her childhood back – and for that I can’t thank them enough.

Polar Dip

Despite the assertions of some Canadian friends that it couldn’t be a “real” polar bear dip without having to break some ice, in the middle of December Mike decided to take part in our local New Year’s Day polar swim. With just a smidge over 2 weeks to prepare for this madness, you wouldn’t be blamed if you thought Mike was completely mad – believe me when I say it was something that went through my mind too – but the reason for it is actually a fantastic one.

You have all heard me talk a lot about the amazing charity, Over The Wall, who provides free therapeutic camps for children with serious health challenges as well as their siblings and families. G and M have been fortunate enough to go to these camps twice each over the last 3 years and the difference it has made to them both is incredible. Since G’s first trip to the South Siblings Camp in 2016, we have taken every opportunity we’ve been able to find to raise awareness and funds for them – from M’s presentation at school to G’s sponsored hair-cut. I’ve talked to more people than I can even begin to count about just how special this charity is and in the last year have been delighted that 2 fellow EGID Mums were successful in their applications for camps too.

2019 marks 20 years since OTW’s first camp in the UK and they are looking to mark that anniversary by being able to send 1,000 children, young people and families to one of their camps. We want to help them achieve that goal, knowing from firsthand experience just how invaluable their camps truly are, and will be spending the year finding new ways to support them just as they have supported G and M.

And that’s why Mike kicked off our fundraising year in style with his Polar swim. He chose to swim in 9° water for 20 minutes – 1 minute for every year that Over The Wall is celebrating this year – and we set a tentative target of £200. Thanks to the generosity of friends and family, Mike not only more than managed his New Year’s Day dip, but also raised a fantastic £223!

If you’re able to give even a small amount, I know that Over The Wall will make very good use of it and you will be helping enrich the lives of young people living with health challenges, just like G and M. You can donate via their special 20 years donation page here.

Welcome to 2019

It feels a little strange to be putting fingers to the keyboard and sharing news with you all once again. Since the last time I wrote, we’ve celebrated Christmas, seen in the New Year, made some big decisions about future plans and the children have headed back to school. Mike kicked off the New Year in style – something I’ll share more about in my next post – as part of our family commitment for 2019.

To be honest I was glad to see the back of 2018, which had challenged us all from almost the beginning of the year, thanks to a nasty bout of Aussie ‘flu and…well…everything else that then followed on from that. Don’t get me wrong, it wasn’t all bad and there were also lots of highlights from our year to celebrate too. Unfortunately and almost unbelievably, 2018 finished in much the same way it started with the sad news that one of my Godmothers passed away just before Christmas and 2019 obviously didn’t get the memo that it needed to improve on our experiences and kicked off with further news of ill-health for both friends and family.

However, I’ve learned some important lessons in 2018 and will be taking them forward into our New Year. I have some wonderful freefrom finds to share amongst other news and I’ve no doubt there will be discoveries and adventures to write about as 2019 unfurls.

Here’s to a year of discovery and wonder for us all.

Small businesses too good to miss!

There really is something very rewarding about shopping local and supporting small businesses and that is even more true when those small business owners are also friends, or become friends as a result of their business. We have been extremely lucky over the last few years to develop friendships and therefore fantastic working relationships with food producers who have, as a result of those friendships, readily taken on the challenge of feeding M, even at his most restricted, and succeeded to the absolute delight of us all. I would really recommend getting to know your local farmers and food producers and don’t be afraid to strike up a conversation with them to see if they can help – you might just be surprised by their reply.

Borough 22 is one such success story and someone I love to shout out about on a fairly regular basis as you’ll quickly discover if you browse my blog. Created by the incredibly talented Ryan, who holds the as yet unchallenged place of ultimate superhero in M’s heart, this company bakes the most delicious allergy-friendly doughnuts, which have graced our table on many occasions. I discovered Ryan through the FreeFrom Food Awards a couple of years and he readily accepted my challenge to create an M-friendly doughnut using just the 5 safe foods M had at the time. Not happy with just creating a passable doughnut, Ryan continued to try to perfect the recipe each time we ordered until he produced a masterpiece that has kept us all delighted. With the countdown to Christmas now fast approaching, I will be placing our order for doughnuts soon and would highly recommend you beat the final order deadline of December 12 to add these unmissable treats to your seasonal table.

Another favourite was also a discovery thanks to the FreeFrom family of Awards, though this time the Eating Out Awards, rather than the Food Awards. Café Nouveau near Frome is a worthy three-time gold winner and owner Susan has become another family favourite since we first judged the venue 3 years ago. She has also embraced the challenge of feeding M safely and was delighted to hear this year that his list of safe foods had expanded enough for her to try a new dish when we visited as part of this year’s judging panel. This paragraph is something of a confession to Susan, who I know is a regular reader of my blog, as we had gone on the pretence of a late birthday lunch for Mike, carefully concealing the fact that it was a convenient cover story for our judges’ visit. This anonymity is critical when acting as a judge and it was fantastic to see first-hand that Susan’s care for her customers extended to all who were visiting the café that afternoon and not just those she might have suspected! G loves eating out here as she can happily choose anything from the menu and was delighted by the prospect of safe waffles the weekend we visited, though she was disappointed to learn they had run out of the dairy-free ice-cream she was hoping to sample.

My final shout-out is for a new business to my blog, but one that we are delighted to have found. Ben is an ex-work colleague of mine and he and his wife Mandy have become firm friends over the last few months. They own a small-holding just outside of Bristol and Ben has ventured into the world of producing home-made meat products, including some great gluten-free options, through his business, Ben’s Farm Kitchen. G has been delighted with their delicious GF honey roast sausages and sausage rolls, whilst Mike and I have become big fans of the “normal” and GF scotch eggs, especially the pickled beetroot ones. However, the real success story has been their willingness to try and prepare M-friendly sausages and burgers, which has possibly been one of the highlights of 2018 for M. I worked with Mandy to make sure the ingredients used were as safe for M as possible and the meat mix she created has been a huge hit in our household. M has already asked me to make sure we have a supply of “his” sausages and burgers in for Christmas and that’s a request I’m delighted to fulfil. Not only do we know the provenance of the food we’re eating, but I’m reassured that they want to get it right for the family as much as we do.

Finishing the summer in style

With Christmas now just 6 weeks away – eek, where has this year gone?! – it’s hard to believe that I still haven’t finished telling the tales of our busy summer. You’d have thought our fairly last-minute plans to fly out to Canada for 2 weeks would have been more than enough to keep us all occupied, but we had even more adventures squeezed in to the final 10 days of the summer holidays before school started back.

We had the return journey from hell with a disrupted flight thanks to a group of rowdy French exchange students, who got into arguments and near fist fights with both the airline crew and other passengers, just rows away from the seats we were sitting in. I have never been so upset on a flight and am just grateful that the children were more entertained by the films they chose to watch, than scared by the events going on around them. This behaviour continued in the Dublin airport terminal and didn’t help the stress of a delayed flight back, which meant we missed our onward flight home by mere minutes. Mike and I were tired, grumpy and so fed up by all we experienced, that we complained long and hard, which fortunately secured us a later flight home, though it was 12 hours later than originally planned, and a hotel room for the day, which gave us the chance to catch up on some much-needed sleep, something that had been impossible on the plane.

We were both back at work the following day, whilst G and M went to my Mum’s for the last 2 days of the week. We rushed through the washing and then found ourselves packing once again for a weekend in Liverpool to see the Terracotta Warriors exhibition that we had missed when we visited back in April and what was, perhaps, the highlight of M’s summer holiday – a week at Over The Wall. Our weekend in Liverpool was a great success, especially as we managed a return trip to both of the fabulous freefrom restaurants we had discovered on our previous visit, something both children were desperate to do. The morning spent at the World Museum was well worth it and we all enjoyed seeing the amazing Terracotta Warriors that were on display. It’s hard to believe that it’s been 17 years since Mike and I first saw them in Xi’an, China and fantastic to introduce G and M to this incredible ancient tribute to China’s first emperor. They also insisted we explored every other part of the museum we could and given the rather miserable weather, it was a great way to entertain them whilst away from home.

From Liverpool, we headed back South, dropping M off at the Midlands OTW Health Challenges camp for what we had no doubt would be an amazing week for him again. I cannot begin to describe the incredible benefits that M gets from OTW and why this charity deserves all the support and praise we can possibly give it. Once again the camp chefs outdid our expectations and created meals for M that went beyond our wildest dreams – and yet again apparently put my attempts to shame. This year, however, I can take great solace in the fact that M shared with the chef that I put my recipes on this blog and he not only took a look at them, but also used them to help cook treats for M whilst he was at camp. Just as with his stay at the South HC camp 2 years ago, M was exhausted after a week of unbelievable fun and challenge and just about managed to survive the very final bit of our seemingly endless summer adventures.

OTW’s Midlands camp is based just minutes away from the National Memorial Arboretum near Lichfield, Staffordshire and it seemed a shame to be so close and not stop there for a relatively quick visit. The NMA is somewhere I’ve long considered visiting and we chose a beautiful day to make the trip. Both children were about studying the World Wars at school and with 2018 marking the centenary of the Armistice, it seemed fitting to spend some time walking the grounds and exploring the many memorials that are found here. It was a remarkable and moving place to visit and I’m glad we made the effort to, despite M’s reluctance and overwhelming tiredness from a week away from home.